Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 526–550 of 560 publications
Parental hopes, interventions, and survival of neonates with trisomy 13 and trisomy 18
Trisomy 13 and 18 are life-limiting conditions for which a palliative approach is frequently recommended. The objective of this study was to examine parental goals/decisions, the length of life of their child and factors associated with survival. Parents of ch…
Parental involvement in neonatal critical care decision-making
The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end …
Parental needs in infant's end of life and bereavement in NICU: A qualitative study
Background and Aims: Newborn death is an unexpected outcome for parents. Parents are faced with several needs in their infant's end-of-life. The health care team is responsible to meet these needs. This qualitative study aim was to explore parental needs in in…
Parent Perspectives of Neonatal Intensive Care at the End-of-Life
This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the primary th…
Parent reported outcomes of quality care and satisfaction in the context of a life-limiting fetal diagnosis
OBJECTIVE: To identify which quality indicators (QI) predict patient satisfaction. METHODS: A cross-sectional design using a validated tool was administered using a Web-based platform. Parents (n = 405) who experienced a life-limiting fetal diagnosis and opted…
Patient End-of-Life Experiences for Pediatric Trainees: Spanning the Educational Continuum
Background End-of-life care for a child is an emotionally charged experience for pediatric trainees. Objectives Describe the progression of medical trainee experiences with end-of-life care and determine personal/professional experiences that facilitated integ…
Perceptions of Palliative Care in the NICU
BACKGROUND AND PURPOSE: The American Academy of Pediatrics supports palliative care (PC) for all children with life-threatening illnesses. Thus, many neonatal intensive care unit (NICU) patients and their families could benefit from PC. Our study objective was…
Perinatal Decision Making for Preterm Infants with Congenital Heart Disease: Determinable Risk Factors for Mortality
For premature infants with congenital heart disease (CHD), it may be unclear when the burdens of treatment outweigh potential benefits. Parents may thus have to choose between comfort care at birth and medical stabilization until surgical repair is feasible. B…
Primary palliative care in the neonatal intensive care setting: What is possible? what is necessary?
Objectives * Reflect on current neonatal intensive care practice for the seriously ill and or dying neonate. * Explore the role of the primary palliative care clinician. * Discuss palliative educational goals for intensive care clinicians. Introduction: This s…
Provision of Services in Perinatal Palliative Care: A Multicenter Survey in the United States
BACKGROUND: Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy affected by a l…
Quality Indicators and Parental Satisfaction With Perinatal Palliative Care in the Intrapartum Setting After Diagnosis of a Life-Limiting Fetal Condition
Measurement of quality indicators (QIs) in perinatal palliative care has not been addressed. Parents who chose to continue pregnancy after a diagnosis of a life-limiting fetal condition described perceptions of quality care and their satisfaction with care. Th…
Reducing Perinatal Mortality in Nepal Using Helping Babies Breathe
BACKGROUND AND OBJECTIVE: Newborns are at the highest risk of dying around the time of birth, due to intrapartum-related complications. Our study's objective was to improve adherence to the Helping Babies Breathe (HBB) neonatal resuscitation protocol and reduc…
Retrospective cross-sectional review of survival rates in critically ill children admitted to a combined paediatric/neonatal intensive care unit in Johannesburg, South Africa, 2013-2015
OBJECTIVE: Report on survival to discharge of children in a combined paediatric/neonatal intensive care unit (PNICU). DESIGN AND SETTING: Retrospective cross-sectional record review. PARTICIPANTS: All children (medical and surgical patients) admitted to PNICU …
Shared decision making for infants born at the threshold of viability: a prognosis-based guideline
OBJECTIVE: Making prenatal decisions regarding resuscitation of extremely premature infants, based on gestational age alone is inadequate. We developed a prognosis-based guideline. STUDY DESIGN: We followed a five step approach and used the AGREE II framework:…
Survival Among Infants Born at 22 or 23 Weeks' Gestation Following Active Prenatal and Postnatal Care
Importance: Rates of survival for infants born at the border of viability are still low and vary considerably among neonatal intensive care units. Objective: To determine whether higher survival rates and better short-term outcomes for infants born at 22 or 23…
The end-of-life spiritual care service package in the Newborn intensive care unit(S)
Objectives: Despite current advances in child care scientific models, most children are at risk of dying in the neonatal period or immediately before delivery. Parents experience deep pain and suffering because of the death of their infant. Several studies men…
The impact of a perinatal palliative care on length of stay, ICU days and invasive procedures
Objectives * Describe the history, epidemiology, and role of perinatal palliative care. * Examine the impact of perinatal palliative care on neonatal outcomes at the University of Minnesota. * Explore the potential benefits of perinatal palliative care for the…
Trisomy 18: A survey of opinions, attitudes, and practices of neonatologists
We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal anomalies…
End-of-life care in a regional level IV neonatal intensive care unit after implementation of a palliative care initiative
OBJECTIVE: We hypothesized that the implementation of a neonatal palliative care initiative will result in improved markers of end-of-life care. STUDY DESIGN: A retrospective and prospective chart review of neonatal intensive care unit deaths was performed for…
End-of-life decisions in perinatal care: A view from health-care providers in Mexico
OBJECTIVE: To examine the opinions of a perinatal health team regarding decisions related to late termination of pregnancy and severely ill newborns. MATERIALS AND METHODS: An anonymous questionnaire was administered to physicians, social workers, and nurses i…
Impact of a palliative care program on end-of-life care in a neonatal intensive care unit
OBJECTIVE: Evaluate changes in end-of-life care following initiation of a palliative care program in a neonatal intensive care unit. STUDY DESIGN: Retrospective study comparing infant deaths before and after implementation of a Palliative Care Program comprise…
Palliative care in neonatal neurology: robust support for infants, families and clinicians
Infants with neurological injury and their families face unique challenges in the neonatal intensive care unit. As specialty palliative care support becomes increasingly available, we must consider how to intentionally incorporate palliative care principles in…